We end up finding our new "normal", right? At 35 it's still hard for me to pace myself and I'm still in the feeling that this isn't fair phase...which seems to come up again each time I have an extended flare. It's much easier to be accepting of life changes...long sleeves in summer, dietary restrictions, early bedtime, etc...when I'm feeling crummy only 20-50% of the time....once I hit the flare and it's 100% again, I'm back to feeling life is unfair : )
Steinfadt1 said:
Your post made me smile. I know it wasn't meant to be funny. I guess I just laughed because I can relate. I feel good"ish" from 8-11 am. Crummy from 11 am-7 pm. Good"ish" again from 7 pm-9pm. Bed at 9 pm. Then do it all over the next day.
Yes, so much to be grateful for, everything except my health...LOL!
jo4him said:
We all feel crummy. You pic shows a beautiful baby, try to count your blessings. Every time disaster strikes I remember how good I felt before the disaster and feel grateful for what I have, not what I don't. Counting my blessings, Jolene
How long have you been experimenting for? I'm on the same search....10 years now. So a flare feels like a failure of my analytical abilities in addition to feeling crummy : ). Have you found a remedy for pain? I just picked up some homeopathic ideas yesterday...$30 on another experiment : )
Flygirl said:
Oohhhh yes....I can relate. Just wait for the next good day to come and enjoy that one. Everyday is an experiment for me....food, meds, etc....always trying to find what works!
Yes, my pet and my kids : ). There's always something to get out of bed for, even if getting out of bed means starting a crummy day. Thank goodness it's mixed bag with good days too!!
heymj said:
Just wanted to say I can relate as well. I try to find some good moments in my otherwise feeling so crummy. That and my pets are about all that keeps me going. Hang in there!
Definitely kids too! Mine is all grown up now though but now I have lovely grandchildren. I feel extra blessed because they live so close to me so I see them often!
We all need to find the good in everyday, even if it's just that we're breathing!!!!!!!!!!!!!!!!!!
Try to find something positive in every hour, we all need to count our blessings for the small things in our lives. Things could always be worse. TRY to focus on finding things to make yourself feel better.
I can relate I feel crummy today.. I have good new, I planned my daughters baby shower and actually got thru it. It was on Saturday. I did have pain in my toes, and had a lot of aches and pains, but I made it I did it. The shower was beautiful and this is my first grandbaby so it is so excited. I worry all the time about being the sick grandma. I am paying for being so active today. I have not left the couch all day. But Saturday was what gives me hope. I hope things get better for you.
YAY!!! I stress out about events too. I'm planning a plane trip to visit a friend who is going through a divorce and I'm starting to worry about how things are going to go. I have told her I can't do any outdoor activities or eat outside of the home, putting a cramp in our fun, but my hope is to live through the trip and maybe even enjoy it a bit : )
zippy said:
I can relate I feel crummy today.. I have good new, I planned my daughters baby shower and actually got thru it. It was on Saturday. I did have pain in my toes, and had a lot of aches and pains, but I made it I did it. The shower was beautiful and this is my first grandbaby so it is so excited. I worry all the time about being the sick grandma. I am paying for being so active today. I have not left the couch all day. But Saturday was what gives me hope. I hope things get better for you.
I agree there is a fine line between support and tired of hearing it, I'm soooooooo tired of feeling like crap all the time anymore I've just about given up. Everyday I get up thinking maybe today will be better, maybe one day .....
Roxy said:
Even though DH us supportive, there is a limit how much I tell him. Of course he can see the sweat rolling down me and hear when I am winded but there is a fine line between being supportive and getting tired of hearing it
I feel for you...I feel the same. It is my new normal and I hate it. I'm in a flare right now and really struggling, but we have to keep on gettin' on, so I take a deep breath and look for something to make me feel happy. I may not be able to feel good physically, but I can find things to make me feel good emotionally, and that's how I cope. Sending a smile your way and hope you can find some happy to help you : )
I can definately relate. I felt crummy so consistently, and for so long, that I didn't even realize I felt crummy. Then I started Prednisone, and one morning I woke up feeling great! I felt like my old self again, and I was sooooo happy. I hadn't even realized how bad I felt until I didn't feel bad for a brief moment in time.
Naturally, I overdid it that day and it took three days to get back to my new "normal". So now, I try to take it easy even if I feel not-so-crummy. That way I can stretch the not-so-crummy out longer. It's frustrating to hold back, but it seems to be working.
Hi, I hope you start to feel better. SLE pulls all my energy out and I fill guilty I'm 47yrs old and right now I fell so much older. I'm awaiting on the decision from disability this week that has me really stressed out which turns up my diseases.
You are not alone! You could have been describing me when you wrote that. It took me almost 3yrs to get disability. I was 53 when I got it (now 56). It was a long haul to get it but when it got it it helped financially as well as physically because I could get treatment that I couldn’t afford before. Hopefully it’ll help take some pressure off. I feel sometimes 70 yrs old. I’ve recently had a flare and know how you feel. No life, and what you have seems clouded by this disease. Yesterday was the first break in my most recent flare and I hope to continue to come out of it. I wish the same for you. To survive we have to learn to accept it and pray for the times that you feel well. I hope you don’t have to wait much longer.